Happy to Sad in T Minus Five and Counting

          Happy to Sad in T Minus Five and Counting

 I was laying in bed this morning, enjoying the quiet and watching some tv. I could see on the monitor that Liam was awake, watching Pat and Jen on YouTube, and playing Minecraft. All was right in our world.

   Or so I thought.

   Not ten minutes later, I saw him head to my chair and turn on my heating pad. He disappeared for a moment, as he headed into the kitchen and turned on my Keurig. This kid has my morning shuffle down pat! I was beaming with pride at his kindness and as as he walked in, I couldn’t wait to tell him how sweet that was.

   Then he stopped at the foot of my bed. His back was to me, as he stared at the fireplace. What he said next made my heart skip a beat, and then lodge in my throat.

   In a quiet little voice, that is so unlike my son, he said, “Mommy, I was watching YouTube and then my brain had two more bad thoughts…. I didn’t want to be alone, so I came to get you. I turned on your heating pad, and got your coffee started. Can you please come out to the living room with me?”

                                       Instantaneous Heartbreak……………….

   That saying, “You never know how strong you are until being strong is the only choice you have,” well that is my son’s life in a nutshell. He has over come more emotionally and mentally at (almost) 10 years old, than some people have to, in their entire life time. And he keeps fighting.  

   And here comes the cycle. The big one. The one that makes his life constant turmoil for weeks. It starts slowly. Working it’s way in, and then it hits like a hurricane, and there’s no turning back.

   Being Autistic is a struggle in and of itself, then you add in a mix of comorbids, (the simultaneous presence of two chronic diseases, disorders, or conditions in a patient. Ex:. ADHD, Anxiety, etc.) Now toss in a mental illness to boot, well then you have a recipe for disaster. I’m not kidding. I’m also not trying to sound heartless, I’m being honest.

   This isn’t to say he doesn’t have good days. The majority of his days are good. Yes, he has meltdowns, yes he stims,(self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.) But those things come with the autism territory. We roll with those punches. It’s the mental illness that puts the most strain on him, and honestly us too.

   I said it many times before, but I’ll say it again. Being a parent, it’s our job to care for our children. To help what ails them. But when it’s something you can’t fix, it’s devastating. When they look at you and ask, “Mommy, can’t you make it stop?” your heart rips in two.

   Thankfully the older Liam gets, and thanks to his hard work, and his amazing SLP, (Speech-language pathologists (SLPs) work to prevent, assess, diagnose, and treat speech, language, social communication, cognitive-communication, and swallowing disorders in children and adults,) and his amazing BSC’s, (Behavioral Specialist Consultant – A BSC can provide training, consultation and supervision of team members in any setting where a child may be experiencing emotional or behavioral problems,)  he has become articulate enough to express these feelings. He doesn’t hold them in and let them eat away at him. He tells us. Each and every one. The feelings he expresses overwhelm us. Can you imagine how it must be for him?

   I can’t. And when I try, I ache so bad for him, that I can’t bring myself to think of it. I have to become numb. I have to autopilot myself. Everything around me becomes static, because the only thing I can focus on, the only thing I NEED to focus on, is him.

   And so the countdown begins. The countdown to the yearly cycle that puts us all in an alternate universe. Hell. That’s how we all describe it. It’s Hell.

  In our world, Hell is this time of the year. Liam withdraws. He barely eats. He either cries, or screams and is beside himself with grief, for weeks on end. He stims, A LOT! Mainly rocking, or wanting to be rocked in our laps. Thankfully he does talk to us, but barely. He doesn’t communicate “normally.” He will tell us what his “mind tells him,” but that’s it. He doesn’t smile. He doesn’t laugh. Nothing that would normally make him happy works. He refuses to leave the confines of our home. If we do manage to get him out, his anxiety worsens, and it just isn’t worth it. We can’t leave his side. He can’t be alone for even a moment. When he cycles this deeply, suicide is a real worry.

   Yes, you read that right. My (almost) ten year old has suicidal thoughts. He has since he was five years old. It’s hard to write. Even harder to say. But we have to. People need to know the reality of mental illness in children. Dangerous objects in the home that you may not think about normally, you become super focused on. For instance, the knives I keep over my stove, they’re out of his reach, but what if I went to use the bathroom and he climbed up and got one? So they have to be moved out of even my reach. (He’s almost as tall as I am.) All the knobs on the gas stove are taken off and put up on top of the fridge (with the knives.) That way, God forbid his mind went there, he wouldn’t get to them before one of us could get to him.

   This is our reality. This is our life. This is his struggle. This is real. This is Hell.

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Autism Light: David Kot

Autism Light #446 is David Kot.

David Kot is a comic book script writer who founded Face Value Comics, a non-profit which raises autism awareness and featured the world’s first comic book hero with autism. David lives in York, Pennsylvania with his wife Angie and four children. In addition to his own clinical diagnosis as an adult with Asperger’s, his young step-daughter also has autism. David Kot is an Autism Light for his influential efforts to raise autism awareness through his comic book enterprise and as a self-advocate.

The following is a video where David Kot explains how Face Value Comics is intentional about raising autism awareness.

Face Value Comics: David Kot and Angela Kot created Face Value Comics, which was legally incorporated as a non-profit organization in 2011 and is presently a 501 (c) 3 non-profit organization. According to their website, “Autism at Face Value practises ‘comic awareness’ and employs the use of comic books and educational toys to publicly demystify Autism Spectrum Disorders (Autism at Face Value – About Us).”

Some of the accomplishments of Face Value Comics include:

  • Introducing the character “Michael” who is the first comic book super hero with autism.
  • Having a third party medical journal review their work for their therapeutic value to children.
  • Advising the Dover Area School District on new special needs curriculum based on our use of facial feature recognition helps us maintain our non-profit status.

David Kot says,

“Comic book author and pop-icon Stan Lee wrote Spiderman when he was 40 years old. I debuted Face Value Comics #1 a year earlier than my role-model. Since this time, we have been on the nation’s largest news network, reviewed in a medical journal, and outsold some popular titles. Our comic has been nominated and won two international awards for Children’s Literature (Ireland, Canada) and enshrined in the National History of Disability History in New York. We have international print and distribution for our comics. Additionally, we hold the copyright on our work, and are proud to give kids heroes like themselves. In the future, we have many great plans.”

His plans for Face Value Comics in the future include:

  • Developing public school special needs curriculum with the Dover Area School District for a net surplus, insulated against legislative budget cuts, and without levying a single dime to the typical taxpayer;
  • Sensory-friendly action figures of our heroes, with flexible pieces (i.e. silk cape or wool cape), designed to calm children who play while they play;
  • Printing comic books with 3D features, like raised facial expressions to literally feel emotions, which also opens comic books to the low/no-vision community;
  • Visiting the U.S. Congressional Autism Caucus by (Mike Doyle’s) invitation;
  • Continued issues of comics, including special guest artists and authors;
  • Advocating and teaching young people and adults about living with autism; and
  • Finishing my doctoral research as my health and time allows.
Copyright 2016 – Face Value Comics

Author: To date David Kot has published three comic books labeled Face Value Comics #1, #2, and #3. Face Value Comics #4 is in the production phase.

Ordering Information: You can order print copies of comics by Autism Face Value at their page on Indyplanet. Digital copies, including a pay-what-you-want price option on Issue #1, are available at Drive Thru Comics.

Education: David Kot has the following educational background.

David Kot
  • Since 2006 he has been studying at Capella University. He has earned a Master of Science in Human Services (Psychology) and did his graduate research in Self-funding community clinics to include self-injurious clients, in respect to billing, coding, and clinical interventions. 
  • David Kot is expected to earn his Doctor of Philosophy, Psychology in 2016 from Capella University. His PhD research focus has been Autism and multicultural, nonverbal communication strategies that promote compassion and empathy. 

Blogger: David Kot writes a blog as part of his advocacy on his website. The following two articles are representative of some of the content.

#WeAut2Vote Campaign: David Kot has been working hard to advocate for making voting accessible to people with autism in the Winter and Spring of 2016. He has solicited the support of ALL Pennsylvania senators and support is growing throughout the United States. His advocacy includes helping individuals with autism to:

  1. Register to Vote
  2. Identify their Local Polling Place
  3. Use Absentee Ballots When Their Disability Prevents Typical Voting Inclusion.

The York Dispatch wrote an article on David Kot’s efforts to get out the autstic vote (Greg Gross, The York Dispatch, March 28, 2016).

Encouragement to those with Asperger’s: David Kot offered these words of encouragement to others with Asperger’s.

“In a world run by neurotypical people (i.e.: people without autism), some comforting words by George Bernard Shaw and the Kennedy family: ‘You see things; and you say, ‘Why?’ But I dream things that never were; and I say, ‘Why not?’’ By this, I encourage people living with autism to remember how we brought you a comic book hero with autism, not industry giants like DC or Marvel (Disney) Comics. I am just a guy living in a small town with a dream, limited resources, but with great supports who love and value me as much as any work I have done or may yet do (David Kot).”

David Kot provided this summary of his autism advocacy and his appreciation for people who assist him in shining his light for autism.

“In summary, I hope any other person – with or without autism – may look to what I have done and replicate something similar, for their own advocacy on any number of deeply-concerning social topics that get bypassed by mass media monopolies, and for the benefit of younger readers in the future. One may say that writing a comic book has launched autism advocacy through national news coverage, educational reform based on science with economical responsibility, address of congressional representatives, and review in a legitimate medical journal. Yes- a comic book paved the way. I think about our success as one average guy’s science-fiction story (equally heavy in both parts ‘science’ and ‘fiction’) that makes people believe in fantastic opportunities – in equality – like those events described. I could not have done any of these things without so many long evenings with my wife, Angela, and our artist, Sky Owens. He patiently taught me how to write for comic books, and his thirty years’ experience in the comic book industry shows on the static page. Angela listened to my writings, and offered many great changes from her views as a mother and wife living with autism. She also has a very active imagination! Overall, I am just a man. However, I also have great supports and people who love me. I never thought our comic book would be published in a medical journal before my own doctoral defense. We must never stop believing we deserve good things for ourselves or our children, who need our collective best (David Kot).”

Social Media: You can follow Face Value Comics at the following social media areas.

Media: You can read more about David Kot’s autism advocacy in the following media features. 

Special thanks to David Kot for being an Autism Light through his amazing talent in comic book script. Face Value Comics is an independent company that can offer hope and encouragement to the autism community as well as educate others about this growing group of people in our society. We wish David continued success in his endeavors as a self-advocate and his role as an autism father.

Autism Light honors diverse heroes to the world of autism.

The photo of David Kot was used with permission of David Kot. Comic book images are copyright by Autism at Face Value (2016).

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